The Mölnlycke Health Care blog
The realities of life with epidermolysis bullosa
The rare, inherited, genetic skin condition, epidermolysis bullosa (EB), does not usually make headlines. In fact, unless you have been affected by it in one way or another, chances are, you have never heard of it.
Awareness is one important piece of the EB puzzle. But because EB is quite rare – only one of 50,000 babies are affected – it is not something most of us hear or read about, let alone have experience with. There is no known cure for EB, only ameliorative tactics for keeping the sufferer comfortable.
The extreme pain and fragility of the skin are just the beginning for patients and their families who cope with the difficulties of managing EB every day. The patient suffers but the condition has a material effect on everyone in a family. While personal stories and treatment challenges rarely become headline news, it does sometimes happen. Only with greater visibility will these challenges become better known.
In August, the story of a baby with EB in South Africa did make front-page news (The Daily News). Not only did the story build awareness of the kind of pain and suffering EB patients face daily as well as the severity of their condition, it also highlighted both the lack of treatment options and the expense of those that do exist. For the family in the article, EB treatment meant full-time care, meaning that they gave up their jobs and spent thousands of rands monthly on the products (ointments, dressings, etc.) that could reduce their son's suffering.
To learn more about epidermolysis bullosa and its treatment, visit the DEBRA International homepage. DEBRA International is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition EB.
The 2015 DEBRA International Conference will take place from 24 to 26 September in London.